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Newborn Screening
Frequently Asked Questions
Routine Screening
What is the purpose of the Newborn Screening Program?
What is the chance my baby has a disorder that can be detected by screening?
How are the tests done?
For which treatable disorders will my baby be screened?
Who decides which disorders are included in Newborn Screening?
May I refuse these tests?
How are results reported and how would I be notified if my baby needs special care?
I was called and told that my baby's test needs to be repeated. Does that mean that my baby has a disorder?
Optional Screening
Research studies of new tests (Pilot studies).
What pilot studies are being conducted now?
Why is newborn screening for cystic fibrosis and the additional set of metabolic disorders being offered as pilot studies, rather than being mandated like the other 10 disorders?
Can any newborn participate in the pilot studies?
May I refuse to participate in one or both of the pilot studies?
How do I enroll? Or, how do I refuse to participate?
What are the general benefits and risks associated with the pilot studies?
Where can I find out more about the pilot studies?
Additional Information for parents Who want to know more about the 2 pilot studies
Pilot study #1 Newborn screening for markers of cystic fibrosis.
Pilot study #2 Newborn screening for a set of 19 additional metabolic disorders.
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